Discussions By Condition: I cannot get a diagnosis.

My child needs help!

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: kimmie75
  • March 13, 2009
  • 06:21 AM

My daughter has been sickly since birth. She was diagnosed with cyclic vomiting syndrome when she was around nine years old, so I'm used to bouts with illness. However, six months ago, my now 13 year old daughter began vomiting, complained of headache, stomachache, and dizziness. She was hospitalized twice for abdominal migraine, and after about six or so weeks, she began feeling better. She was placed on 25mg. of Topomax twice daily to try to control her episodes. Since then, she has been dealing with severe episodes of dizziness, which incidentally was not a symptom in her earlier years. This past Monday, after she had been ill for two weeks, I took her to the emergency room. She had been unable to keep food or drink down for two weeks, despite anti-nausea medication such as Reglan, phenergin, and Zofran. Her doctor put her on another migraine medication called Relpax, but she had been unable to digest it.
While at the emergency room, she began to twitch, in the manner of having a cold chill. The doctor assured me that it was probably her electrolyte levels being off-kilter, and after she was given I.V. fluids, I.V. Zofran and torodol, she stopped, so I assumed she was correct. I took her home, and the next day, late in the afternoon, she started to have her "cold chills" again. They progressively worsened into jerky muscle spasms in her neck, shoulders and arms. I took her back to the emergency room, and by the time they got her back to a room, her feet and legs were involved. She was jerking so hard that she looked like she was having a seizure or some sort of palsy attack, but was fully concious the entire time. The doctor this night gave her I.V. fluids, more Zofran, more torodol, and Ativan. She fell asleep, but continued jerking, much more minimal, though. They sent us home again, with an appointment to see a neurologist the next day, and was given an EEG, with CT scan and MRI to be done next week.
She was just given these tests six months ago when she was admitted into the hospital prior, and they all came out negative. What is wrong with my daughter? Please help. I'm at my wits end, and scared to death for her.

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  • My daughter has been sickly since birth. She was diagnosed with cyclic vomiting syndrome when she was around nine years old, so I'm used to bouts with illness. However, six months ago, my now 13 year old daughter began vomiting, complained of headache, stomachache, and dizziness. She was hospitalized twice for abdominal migraine, and after about six or so weeks, she began feeling better. She was placed on 25mg. of Topomax twice daily to try to control her episodes. Since then, she has been dealing with severe episodes of dizziness, which incidentally was not a symptom in her earlier years. This past Monday, after she had been ill for two weeks, I took her to the emergency room. She had been unable to keep food or drink down for two weeks, despite anti-nausea medication such as Reglan, phenergin, and Zofran. Her doctor put her on another migraine medication called Relpax, but she had been unable to digest it. While at the emergency room, she began to twitch, in the manner of having a cold chill. The doctor assured me that it was probably her electrolyte levels being off-kilter, and after she was given I.V. fluids, I.V. Zofran and torodol, she stopped, so I assumed she was correct. I took her home, and the next day, late in the afternoon, she started to have her "cold chills" again. They progressively worsened into jerky muscle spasms in her neck, shoulders and arms. I took her back to the emergency room, and by the time they got her back to a room, her feet and legs were involved. She was jerking so hard that she looked like she was having a seizure or some sort of palsy attack, but was fully concious the entire time. The doctor this night gave her I.V. fluids, more Zofran, more torodol, and Ativan. She fell asleep, but continued jerking, much more minimal, though. They sent us home again, with an appointment to see a neurologist the next day, and was given an EEG, with CT scan and MRI to be done next week. She was just given these tests six months ago when she was admitted into the hospital prior, and they all came out negative. What is wrong with my daughter? Please help. I'm at my wits end, and scared to death for her. The dizziness is a possible side effect to the topamax. 50mg seems high for a 13 yo. Please research the side effects of these meds on www.drugs.com Has her gallbladder function been tested? HIDA scan? Prior to her initial episodes six months ago, how frequent were the bouts of nausea/vomiting? Were they weekly, monthly? Did this occur in the morning or at night? After eating? What is her diet like (when she is able to eat)? Was she breast or bottle fed? Where do you live? what are her stools like? How frequent and the quality of the stools? Has she ever had a stool exam done to test for bacteria, parasites, etc? I am so sorry for all you are going thru...the docs are clearly missing something here. I feel her recent dizziness is caused by the topamax...is she or has she taken any other medications in her life? If so what ones? She needs to be tested for nutritional deficiencies - esp B12, iron, D, and I would check her potassium levels and thyroid.Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Thank you for trying to help. As for the topomax, she's a larger child, weighs as much as an adult. I asked many doctors if they felt that it was a side effect of the medication or of withdrawl of the medication since she hadn't been able to take it for over two weeks. None of the doctors felt this was it, as any seizures would have occurred closer to the point she stopped her medicine. She was breast fed for six months, then bottle fed for another six. Her diet consists of normal foods; meats, fruits, vegetables, etc. when she can tolerate food. When she can't, she goes for weeks on I.V. fluids only. We live in Kentucky, close to the Ohio River, but not on it. She began her cyclic vomiting as an infant, with bouts about every six weeks. It came in less frequent durations she aged, until she was about eleven,when she would get sick about every year and a half. Apparently, as she reached puberty, it went into the abdominal migraine phase of the syndrome, for which she was hospitalized twice since August of 2008. Her stools are normal, although a sample has never been taken. I believe she had a thyroid function test when she was about eight, due to her weight. As far as any other medictions, she has been on several for nausea and vomiting, Imitrex, Relpax, vicodin for abdominal and migraine pain... I also forgot to add that during her hospital stays, her spleen was enlarged, and that her eyes hurt to close when she is dizzy. I don't know that this will help or not, but it can't hurt. None of the doctors could tell me why her spleen was enlarged, but didn't seem concerned.
    kimmie75 5 Replies Flag this Response
  • you should ask about piloricstanosis. not sure that is the correct spelling.
    Anonymous 42789 Replies Flag this Response
  • Blaze, while I respect your right to an opinion, I have looked at enough other threads to see that, in EVERY case, you feel that the only possible solution to any medical problem is cell phones, cell towers, etc. I commend your tenacity, however, I don't agree with yourthinking, and I honestly don't feel that it has much, if any, merit, specifically in my daughters' condition. I thank you for pointing out the risks of such things, and I hope that, at some point, somebodies illness will validate your beliefs.
    kimmie75 5 Replies Flag this Response
  • She's still vomiting, although the siezures or spasms or whatever are about nil. She's had a headache for 2 days now, says it hurts really bad when she bends over. HOPEFULLY, at some point, we will get in for some more diagnostic tests, i.e. MRI and CT scans. Her provider is backed up a week or so, they told me yesterday... I'm so frustrated. If they had kept her at Kosair when she was first showing symptoms, we would have already had these tests done, but apparently the hospital was packed full. Sorry, now I'm just ranting... Anyway, again, thank you to all who are trying to help.
    kimmie75 5 Replies Flag this Response
  • Oh, and I almost forgot. Pyloric stenosis: I looked it up, and it's a disease of infancy. I guess that, if she had it, it would have already been diagnosed or she would be dead. Thanks for checking though.
    kimmie75 5 Replies Flag this Response
  • I feel she needs a HIDA scan to check her gallbladder function. She should see an endocrinologist to rule out malabsorption and endocrine disorders. Have they ruled out pancreatitis? Don't give up...there is bound to be a doc who will listen to ALL of her symptoms and find a cause. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Do any of your family members have Lupus? Does anyone on here think it could be?
    Anonymous 42789 Replies Flag this Response
  • Ok, finally got some results. Her Dr called and told me that her EEG came out normal. Which is great, I think. However, she still needs an MRI, which will be on Friday, and her lab work came back with low liver levels and low copper levels. What can those indicate? If anyone knows, please let me in on it. The only thing I can think of is possibly Wilsons?
    kimmie75 5 Replies Flag this Response
  • Wow it sounds like you had your hands full. It looks like it has been some time since your last post, do you have an update?My wife has bouts of vomiting, dizziness, cold sweats, fatigue, and diarrhea. It is not a common problem but we think condition called "dumping". This is when for some reason your body dumps everything and makes you very sick. She does not have the shaking and hurting all over, but it could be something related. I just encourage you to keep looking for the correct Dr. It can be very hard and stressful but you just have to keep trying
    thad99 6 Replies
    • October 31, 2010
    • 09:32 PM
    • 0
    Flag this Response
  • My daughter has been sickly since birth. She was diagnosed with cyclic vomiting syndrome when she was around nine years old, so I'm used to bouts with illness. However, six months ago, my now 13 year old daughter began vomiting, complained of headache, stomachache, and dizziness. She was hospitalized twice for abdominal migraine, and after about six or so weeks, she began feeling better. She was placed on 25mg. of Topomax twice daily to try to control her episodes. Since then, she has been dealing with severe episodes of dizziness, which incidentally was not a symptom in her earlier years. This past Monday, after she had been ill for two weeks, I took her to the emergency room. She had been unable to keep food or drink down for two weeks, despite anti-nausea medication such as Reglan, phenergin, and Zofran. Her doctor put her on another migraine medication called Relpax, but she had been unable to digest it. While at the emergency room, she began to twitch, in the manner of having a cold chill. The doctor assured me that it was probably her electrolyte levels being off-kilter, and after she was given I.V. fluids, I.V. Zofran and torodol, she stopped, so I assumed she was correct. I took her home, and the next day, late in the afternoon, she started to have her "cold chills" again. They progressively worsened into jerky muscle spasms in her neck, shoulders and arms. I took her back to the emergency room, and by the time they got her back to a room, her feet and legs were involved. She was jerking so hard that she looked like she was having a seizure or some sort of palsy attack, but was fully concious the entire time. The doctor this night gave her I.V. fluids, more Zofran, more torodol, and Ativan. She fell asleep, but continued jerking, much more minimal, though. They sent us home again, with an appointment to see a neurologist the next day, and was given an EEG, with CT scan and MRI to be done next week. She was just given these tests six months ago when she was admitted into the hospital prior, and they all came out negative. What is wrong with my daughter? Please help. I'm at my wits end, and scared to death for her.[/QUOTEit took me going to a second neurologist to get my sons seizures diagnosed. I know that i have researched every seizure disorder that there is and i know that I have read those symptoms that your daughter has . By the way... all of my sons test came back negative as well, yet he had upwards of 50-60 of these staring seizures a day and has lost 80% of the vision in has right eye. dont give up. go to every specialist that you can think of. and, second oppinions in all areas if needed. I have spent a year and a half trying to just find out why my son was so spacy not even thinking that he was having seizures . And this was after a fall ten feet onto concrete and they still dismissed his symptoms. He has ABSENCE SEIZURES. I will pray for you and your daughter.
    Anonymous 42789 Replies
    • February 3, 2011
    • 10:30 AM
    • 0
    Flag this Response
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